Tuesday, May 31, 2016

checking in....

It has been a very long time since I posted.  Life has gotten in the way like it can do.  So many changes since I posted last.

I am waiting to get in to a new neurologist.  Having lots of neurological issues and the dreaded "MS" is being considered yet again.  I seem to go through this testing about every 5 to 6 years.  This time around there are more pronounced issues.



R-A-N-D-O-M
...facial numbness 
...heel numbness
...toe and fingertip numbness
...balance issues
...speech issues
...swallowing issues


I know the drill.  Nerve conduction studies, EMGs, visual evoked potential, spinal tap.  Maybe some new tests since the last time...looking forward to new doctor. He is the son of my rheumatologist. 

Lupus isn't known to cause these issues except in very, very rare cases and usually with advanced, aggressive disease.  I am also waiting for Anthem to approve Rituxan as my new treatment since the CellCept is not working like it did.  I have gone up to 3000mg a day and the side effects are just not tolerable anymore on top of the continued disease activity.  Hoping the Rituxan will allow me to get off the damn steroids.  My brain can't keep taking the hit and how it affects the psychosis issues.  Hoping it will also allow me to be weaned off the antipsychotic meds too.  

My kids say I have a freaking pharmacy in my medicine "bag".  They are right it seems like.  I haven't listed my meds ever....so yeah...it's kind of scary to look at.


  1. Cellcept 3000mg/day
  2. Prednisone 40mg/day
  3. Synthroid 200mcg/day
  4. Cytomel 50mcg/day
  5. Januvia 25mg/day
  6. Vitamin D3 15,000IU/day (100,000IU/week)
  7. Torsemide 40mg/day
  8. Estadiol 1mg/day
  9. Seroquel XR 150mg/day
  10. Seroquel 25-50mg/PRN  
  11. Gabapentin 900mg/day
  12. Diflucan 150mg PRN  
  13. Ventolin 2-4puffs every 4 hours PRN
  14. Advair 2 puffs daily
  15. Epipen PRN
  16. Prolia injection every 6 months
  17. Nexium 40mg/day
  18. Zofran 4mg PRN
  19. Flonase 2 sprays twice daily
  20. Restasis 2 drops per eye twice daily
  21. Claritin 40mg/day
  22. Benadryl 100 to 150mg PRN
  23. Astelin 2 sprays twice daily
  24. B Complex vitamin
  25. Multivitamin

3 comments:

Julie Shaw said...

That list....whoa. Praythat there are answers soon, and, good treatment options. Love you.

Julie Shaw said...

I hope there will be a prognosis, and treatment protocol for these new symptoms. Love you, Delana.

lupine.butterfly said...

Thanks Julie!!! <3